Through our years of work with Ben, we gleaned certain key points, which are summarized below. Please note that this list is not a magic bullet or a treatment roadmap, but rather a collection of internal attitudes we addressed in order to prepare ourselves to strategize for Ben’s recovery.
Lesson 1. Believe in your child.
The most important lesson that we learned, and continue to learn, is to believe in Ben’s potential for recovery. regardless of what doctors, family members, and well-meaning friends may tell you, your child has the potential for connection—with you, your family members, peers, and the world around him. Believe in his potential. Believe he can heal.
Lesson 2. No one else can help your child the way you can.
Who is the greatest healer for my child? I am. Who is my child’s greatest expert? I am. Whether you are the parent, grandparent, or the primary caregiver through some other circumstances, if you believe in your child’s potential, and he is in your care, you are the one who can help him recover.
Lesson 3. You don’t have to be perfect to help your child.
It is startling to realize that over six years has gone by since we began our journey of recovery with Ben. One of the most important things I learned along the way is the necessity of allowing myself to be human. As we walked the path, I fell apart sometimes, threw temper tantrums, and had self-pity binges. My husband and I often struggled to remain hopeful in the face of setbacks and the intermittent resumption of Ben’s autistic symptoms. We did nothing perfectly, but we have gone along willingly and persistently. Our consistent actions and love for our child, rather than our inevitably complicated feelings, were what mattered.
If I can help Ben get well, then I believe any mother, father, or car- egiver who wants recovery for his or her child badly enough can do it, too. And how do I define “get well”? Cure? Maybe. Improvement and progress? Definitely. Connection and a more meaningful relationship with your child? Absolutely. We don’t need to be perfect parents with perfect skills, and we don’t need perfect children. This process is about the perfection of love as a driving force to motivate us on a challenging and enlightening journey of connection with our children.
I hated autism. I wanted my son. Today, I don’t hate autism, but I also don’t want my son and family to suffer from it. Today, we don’t have to. When I look at who Ben is today—a functioning, happy, interactive, expressive, deeply-connected child—and compare him to who he was when we began our journey—a child totally imprisoned in autism—I realize that somehow, I have been, done, and loved him enough.
Lesson 4. Cultivate certain internal practices.
In order for Ben to grow, we needed to do the following:
- Fall in love with every part of Ben, including his autism—this took a long time, for both my husband and me.
- Learn to accept, be with, and celebrate our child now—before he acquires the skills we hoped he would someday.
- Learn to study our child: observe, take notes, and make note of his responses to every intervention we tried. This was a skill I had to develop. I tend to be a big-picture person; I had to learn to pay attention to the details, so that I wouldn’t miss subtle pieces of information about Ben’s condition at any given moment.
Lesson 5. Ask the right questions.
After years of exploration, research, and ultimately successful intervention, we realized Ben’s process came down to several key questions:
A. What inspires your child? When you discover your child’s motivations, you discover a bridge across the chasm of disconnection, the chasm that is, of course, the hallmark of autism. Our initial step with Ben was to connect with him on his terms, through the discovery, based on close observation, of what motivated him. This was a core Son-rise Program principle. As Ben realized that we wanted to play his games, on his terms, and have fun in his way, a pivotal change occurred: he became invested. He started to want a relationship with us. Once Ben wanted to connect with us, his brain found a way to rewrite the neural pathways and make that connection happen. Without that pivotal step of igniting Ben’s own desire for connection, the chasm of dis- connection would have remained uncrossable, regardless of any biomedical interventions.
B. What does your child receive from his environment in the form of food, and how well is his digestive system able to process the food he takes in? In other words, how successfully does your child’s digestive system extract and process nutrients that are critical to his internal systems?
C. What does your child receive from his or her environment in the form of toxins (e.g., chemicals, electromagnetic radiation, heavy metals), and how well can his or her immune system purge such toxins? In other words, to what degree does your child’s body contain harmful toxins (e.g., parasites, colonic backup, a clogged liver, or other poisons) that prevent the healthy functioning of his or her internal systems, including your child’s neurological and immune systems?
D. Do you truly want to pursue this path? In our experience, this path is frightening to many parents. The idea that your child can make meaningful progress, and possibly even recover, but that you yourselves have to play a part in that recovery, is terrifying.
These were some of the questions with which I plagued myself over the years of our journey:
- What if I am inadequate, and my child’s failure to heal is my fault?
- What if we can’t afford the financial costs?
- What if my partner and I both have to work and don’t have sufficient time to invest in our child’s recovery?
- What about our other child who also needs our attention and care?
- How on earth will I be able to handle what feels like a completely overwhelming set of steps to take?
- What if I try this path, and my child doesn’t get better? What does that say about me?
Indeed, there is something to be said for running like hell in the opposite direction once you have read this book and heard what we endured. But once we were able to discern the right questions, we were on our way to finding the right answers to vastly improving Ben’s condition and our own situation.
Lesson 6. Find the right answers for your child.
The answers to your child’s autism will be unique to your child. Many interventions that worked for other families did not work for Ben. Conversely, many methods that helped Ben have gotten other children nowhere. In sum, our answers to Ben’s autism so far have been: (a) his Son-rise Program, through which he was nurtured, supported, and ultimately inspired to desire connection with others; (b) nutritional in- terventions, through which his digestive system became able to function more effectively; (c) detoxification and supplementation, through which his immune system became able to respond effectively to toxicity in his body, purging him of harmful organisms that interfere with proper brain function; and (d) supportive counseling and lifestyle training for us as parents, through which we found the hope and strength to love our child and follow this path to its present, much-improved point.
These were our answers, for our child, and for our family. The path offers no guarantees, and your child’s unique constitution, genetic predisposition, and family history will determine his or her needs and solutions.
Become a private detective. Your child, your life with your child, and the life of your family—they’re worth it.
Lesson 7. Accept the ups and downs. They have lessons to teach you.
The greatest challenge for me, throughout the journey, and to this day remains the unpredictability of the process. Often, Ben seemed to be doing well, and then suddenly, without any apparent explanation, he would exhibit autistic symptoms again. Ultimately, I learned enough about Ben’s autism, its causes and triggers, to understand why these symptoms recurred. For Ben, the root always seems to be an organic problem, such as a yeast reaction to an excess of a certain type of food or a hormonal imbalance brought on by poor sleep.
In addition, Ben is also acutely emotionally sensitive. Time after time, as he learned rudimentary social skills, he stumbled badly, like a toddler learning to walk, and experienced rejection from his peers. These experiences devastated him emotionally, and we usually saw autistic symptoms almost immediately afterwards. Ben’s emotional life strongly influences his immune system, so that when he is hit emotionally, he is hit immunologically as well. His impaired immune system in turn impedes his neural functioning, and autistic symptoms return.
Today it is much easier for me to accept the ebb and flow of his behaviors, even if they are troubling. It’s easier for two rea- sons: first, because the swings up and down are much less dramatic and second, because I know he will detox himself sooner or later and resolve whatever issues he is processing, either emotionally or organically.
Lesson 8. Take care of your own needs, and parent yourself as you would parent your child.
I learned that my capacity to accept and flow with Ben’s changes are directly proportional to my degree of self-care. If I neglect myself—exercise, sleep, emotional support, and so forth—Ben’s social challenges wreck me. But if I remember that self-caring is not the same as selfishness, and prioritize my own needs as well as Ben’s, I have much more emotional Teflon against his fluctuations.
Finally, and most importantly, I learned to love myself unconditionally and forgive myself for being a human being and a mother, rather than a healer or a god. I became able to love without expectation. For whatever reason, I had to learn this lesson with Ben first, and then apply that lesson to myself.
(Taken from UNLOCKED: A Family Emerging from the Shadows of Autism, Skyhorse Press, March 2015)